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Help needed please - a bit confused!

Hi

I was diagnosed 12 months ago and since the end of November 2010 I've been on standard 400mg Imatinib.  My PCR results have gone as follows

Nov-10    71.80%
Jan-11       9.80%
Mar-11     13.20%
May-11       3.78%
Jun-11        1.09%
Sep-11       0.62%

I was under the impression that after one year I needed to have a two log reduction and therefore be at around 0.72% (which I've already achieved).  I saw my specialist last week when I had bone marrow taken and he told me the PCR target after 12 months is 0.1%.  Can somebody clarify what the target should be as I'm a tad worried that he may try and change my medication, which I'll be against if results are improving and I'm fortunate to be suffering no side effects.

I know there was a blip in spring of this year (which nobody can explain) but things have been going the right way ever since.

Any clarification on targets would be greatly appreciated so that I can be well informed for my next appointment in a few weeks.

Thank you!

Hi Neil,

I would say that your doctor might be being a little bit picky here given your level is now at

0.62% rather than 0.1...%

the difference between .6 and .1% = .5 .... not much in the scheme of things.

I am assuming the Sept result was from your blood sample given in June?

If so the next result will be from the sample given in September, so it might well be that your level has reduced even further.

You were diagnosed in November 2010, so if we are to be strict about these things, the 12 mths result should be from the blood sample you will give at your next appt. not the one from a sample given in June which would be 7 months from baseline at diagnosis.

However, another reason for your doctor's view on this result might be that he/she is taking into account the possible failure of the appeal on the FAD- negative guidance re 2nd Gen TKI's.... as you know we are currently trying to effect a positive guidance through appealing the FAD on 2nd line use. The hearing will take place on 4th November in Manchester.

I know you are rightly very comfortable with your response to imatinib, but should you at some time in the future not acheive the optimal response of MMR (0.00%), then the availability of high dose imatinib/dasatinib/nilotinib might not be available and you might then be advised to enter a clinical trial of 3rd Gen TKI's.

Of course, we really hope that the appeal will find in our favour and recommend a whole new re-appraisal of the above TKI's in 2nd line, but the outcome is not at all guaranteed and could just as well find in favour of the FAD.

We have to wait until the appeal committee publish their decision, which will come quite quickly after 4th November. I suspect that if they find in favour of the FAD, then there is little time for those who might already show good but sub-optimal responses to get access to 2nd Gen TKI's.

 

I hope this is helpful but I think it  best to have a frank discussion with your doctor, perhaps outlining some of the points above.

 

best wishes,

Sandy

 

 

 

Thanks for a fantastically comprehensive reply Sandy! That's just what I need and I'll take they key points to my meeting next month when hopefully we have an indication to the appeal result.

Hi Sandy

I had the meeting today and the PCR has dropped again to 0.48% (October blood test).

However, the doc said that he wanted to see the cytogenetic showing a negative result, but its actually showing a positive result (albeit it very low).  He would have changed me to nilotinib but after speaking to specialists about me last week, they recommended that I stay on Imatinib and have bone marrow checked again in 6 months.

It appears that the blip in the spring has probably set me back a few months so I'm hoping that I achieve CCyR over the coming months ready for the next bone marrow test in April and then MMR probably a couple of months after the 18 month target.

Feeling completely frustrated by missing the 12 month target.